Before we had the name “Cerebellar Atrophy”, we had come to the conclusion on our own that Les was dealing with a neurological problem. Cecillia came across a program called Z-Health. Their techniques are all based on neurology.
Neurology in a nutshell is this -the brain gets input from the body; interprets the input and decides what to do with that information; and then creates some sort of output. Oftentimes one or more of these steps is not doing its job correctly and it causes problems. The idea of Z-Health is to try to identify where in this cycle a problem exists and stimulate that area of the brain to make it work better. That was a super simple explanation - Here is a 6-minute video explaining it a little better - but still simplified. https://youtu.be/rCzgO_lYMLI
Les has been working with a couple of Z-Health practitioners for about 5 months now. We meet with them weekly over Zoom. Cecillia is the camerawoman and therapy assistant as they ask Les to do various tasks or exercises. Eliana and Patrick are very patient with Les and Les does seem to respond positively to this method of therapy. For example, his ability to use his right hand while throwing a ball is improving.
This month we visited the new neurorehab physical therapist. Mr. Mike is really nice and Les seems to work with him well. Les now sees him twice a week. Mr. Mike spends the entire hour with Les working on various techniques to help him improve his walking.
New PT therapy comes with new exercises added to Les’s Z-Health exercises! You should know that no one in the Fountain family is an exercise enthusiast. But, we know that if Les isn’t using his body, his condition won’t improve, so we are helping him with his exercise homework to hopefully see improved results.
One of Les’s Z-Health exercises is to do small bounces on a mini-trampoline (stimulates the vestibular system in the brain). We have had a mini-trampoline for a long time and had fashioned a PVC support bar for it back when Les was little. Well, Les isn’t “little” anymore, and with the imbalance issue, the support bar wasn’t very supportive anymore. So, Dad engineered some beefier enhancements to the PVC support bar and now Les can feel safe while he lightly bounces on the trampoline.
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| Les doing one of his Z-Health exercises. |
Les’s mobility and thus his ability to be independent has really changed this past year. He has become more home-bound just because it isn’t easy to jump in and out of a car and go shopping, to the movies, or to hang out with friends. We have borrowed wheelchairs and walkers, which are helping, but they each have their downside.
Les can’t maneuver the wheelchair very well on his own and he is always sitting down and not in the eyeline of people who are standing around talking. So, he’s not really part of the conversation. However, the wheelchair is the best choice when traveling longer distances because he fatigues quickly if he is walking with one of the walkers.
The walker, however, is smaller, lighter, and easier to move around. It has become our preferred method of transportation, but we don’t use it as designed. Les will “sit” on the walker’s seat and then just scoot around using his legs or have someone push him around. However, that isn’t the safest way to use a walker. He may or may not have personal experience with this hazard.
So the wheelchair is safer but less desirable. The walker is easier but potentially dangerous. Also, there’s the “use or lose it” concept. Les needs to walk so that he will continue to be able to walk. If he’s sitting in a wheelchair or walker, that isn’t promoting the use of his walking muscles. The walker allows him to walk, but he gets too tired if he has to go very far - so he sits down anyway. And we have to juggle two devices. There is always the question of which one to take with us and we often will just take both and figure it out along the way.
All of our devices are borrowed or garage-sale finds and they have served us well during this time of transition, but we are shopping for something new that will really meet Les’s specific needs. We hope to find something soon.
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| Les practices throwing with his right hand. |